Evaluating empowerment in genetic counseling using patient reported outcomes.

Authors

null

Suat Ying Lee

National Cancer Centre, Singapore, Singapore, Singapore

Suat Ying Lee , Jeanette Yuen , John Lim , Eliza Courtney , Shao Tzu Li , Hazel Soh , Yanni Chen , Marion McAllister , Eva Fenwick , Joanne YY Ngeow

Organizations

National Cancer Centre, Singapore, Singapore, Singapore, National Cancer Centre Singapore, Singapore, Singapore, University OF SYDNEY, Sutherland, AU, Institute of Cancer & Genetics, Cardiff University School of Medicine, Cardiff, UK, Cardiff, United Kingdom, Duke-NUS Medical School, Singapore, Singapore, Singapore, Cleveland Clinic, Cleveland, OH

Research Funding

Other

Background: Despite the demand for cancer genetic services, patient-derived benefits remain poorly captured due to a paucity of validated tools. The Genetic Counselling Outcome Scale (GCOS-24), a genetics-specific Patient Reported Outcome Measure (PROM), has been adapted to evaluate our local cancer genetic service (CGS). We aim to evaluate the psychometric properties of GCOS-24 using Rasch analysis. Methods: 155 patients who attended CGS at National Cancer Centre Singapore (May 2016-2017) were recruited. The questionnaire was interviewer-administered pre- and post-counselling. Responses were subjected to Rasch analysis, comparing individual Rasch item scores pre and post. Multiple regression analysis was used to assess the association of baseline characteristics with changes in scores. Results: GCOS-24 questionnaire displayed good precision (person separation index > 2.0) and targeting (difference between person and item means < 1.0). Cognitive Control [post-intervention: median 1.23 (IQR -0.3-6.2); pre-intervention: median 0.46 (IQR -1.1-3.6)] and Emotional Control [post-intervention: median 0.99 (IQR -1.1-6.4); pre-intervention: median 0.61 (IQR -1.1-3.9)] scores showed significant improvement. All components of cognitive control consistently showed improvement. Notably, aspects of Emotional Control such as alleviating feelings of being upset (p = 0.88) and hopelessness (p = 0.2) did not reflect significant improvement. Family history (p = 0.047) and genetic testing (p = 0.002) were significantly correlated with cognitive control. As for emotional control, genetic testing (p = 0.002) and the female gender (p = 0.033) were also significantly correlated. Conclusions: This study shows that GCOS-24 is well adapted and validated in our population. Significant improvements in cognitive and emotional control are concordant with previous adaptations, demonstrating the value of empowerment through genetic counselling. This study highlights the need for further emphasis to be placed on improving hope and addressing emotions, through hope-based interventions and a systems-based approach to identifying and alleviating negative emotions associated with genetic conditions and testing.

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Abstract Details

Meeting

2018 ASCO Annual Meeting

Session Type

Poster Session

Session Title

Cancer Prevention, Hereditary Genetics, and Epidemiology

Track

Prevention, Risk Reduction, and Genetics

Sub Track

Cancer Genetics

Citation

J Clin Oncol 36, 2018 (suppl; abstr 1547)

DOI

10.1200/JCO.2018.36.15_suppl.1547

Abstract #

1547

Poster Bd #

118

Abstract Disclosures